Wednesday, May 26, 2010

Bad Good News? Good Bad News?

I made a couple of these home collages last week. The letters were from our church's old sign, my friend saved them from for me. I love it when my friends show up with bits and pieces for me.

About the title....we heard from Noah's doctor today. The EEG Noah had last week showed some seizure activity in his brain so we will not be taking him off of his medication.

I am relieved I will not have to follow him like a hawk all summer holding my breath, but I'm also so sad to hear he is still sick. To know he has defiantly not out grown the seizures is heart breaking.

I wasn't prepared for this answer, it wasn't on my radar. I guess I'm sad and relieved at the same time.

Thanks again for all your kinds words, prayers and support. I'll keep you posted.

Friday, May 21, 2010

update and play day

My friend Susan made one of my dreams come true this week. I've always wanted some pictures mommy daughter pictures of Ellie and me. Noah and I have some adorable shots from when we modeled for Sear's portrait studio, but I didn't have any pictures of Ellie and me. Susan met us at the college field station and we basically played around and had a picnic as Susan created these amazing photographs. I'm so grateful for such a beautiful way to remember this special year Ellie and I had together while both the boys were at school all day.

Noah's appointment went well yesterday. We were able to make it there early and happily without anyone getting car sick (the prayers worked). We were even able to check Ellie into the sibling care center, which was so cool she wants to go back tomorrow. The doctor wants Noah off the medicine to see if he has grown out of the seizures if he has a normal EEG. She was so matter of fact, like it was no big deal, but instead of making me upset it put me at ease. We can do this. As she said, "no one should live their whole life on medication", yes a doctor said that. So she immediately made an appointment for an EEG and we were whisked away to another part of the building. The EEG technician was so much better than others we've worked with, it pays to go to a children's hospital. So we are still waiting for the EEG results, but mostly likely we will start taking him down of his med starting next week. More prayers are needed.

Then we had a lovely day in Pittsburgh. Trader Joe's, the strip for lunch and the Children's museum. It was probably too much, but fun.

Thanks for all the kind words, nice thoughts and prayers you've been sending our way.

Tuesday, May 18, 2010

safe in the nest

Well... I have a wicked bad cold, it is raining constantly, Ellie is having a naughty streak (she blames it on her appendix) and the arthritis in my hands is making this painful to type - but none of these things are a real problem, they are annoying but they just aren't the thing behind the thing.

The Big Thing is breathing down my neck.

On Thursday we will drag the family off to Pittsburgh in the wee hours of the morning, this in itself is bad. We are not morning people. The kids and I don;t like to eat much in the morning so we will be car sick and we will all be very crabby. Finally, after getting lost in downtown Pittsburgh, we will arrive at Children's hospital to meet with Noah's pediatric neurologist.

Noah has had a seizure disorder (epilepsy) since he was 2. His seizures are controlled with his Keppra medication. He used to be on Phenobarbital, but it made him a different kid, which we didn't know until we took him off. Imagine thinking your kid had serious ADHD only to find out it is the medicine you have had him on for two years. Anyway, some kids out grow seizure disorders, but the only way to find out if your child has out grown his or her disorder is to take them off their medication. Which we did two years ago. It took almost three months before he started having seizures again, but when he started he had them almost daily for a couple of weeks until the medication was regulated. He falls, he is completely unresponsive, he is shaking with every muscle, he hits his head on the floor, he lands face down in the shower - I hold him and sing "This little light of mine" until it stops, then he sleeps.

On Thursday the doctor will tell us it is time to take him off the medicine again. He is six. He loves to swim, ride his bike, build legos and play outside. This summer will be different. We will always need to be with him. Whenever we can't see or hear him, we will ask, "Noah, are you o.k.?" and if he pauses we will run. We will hold our breath. He will be annoyed at the hovering and we will be exhausted.

I guess my prayer is simply to keep him safe. If he weren't sick I might be tempted to believe my good parenting, three square meals, seat belts and hand washing were in control, but I know better. I'm wishing I could keep my baby birds safely in a box.... but I'm not so sure I would want to be in there with them, things would get ugly in a box with no tv, computer or toys very quickly and I'm not sure they would eat the worms I would bring them.

Friday, May 14, 2010

new baby, new work

I love it when my friends have babies. I was so busy, in the past, with my own babies that I didn't get to enjoy my friend's babies, but now I love it. Welcome to the world Greta.

Friday, May 7, 2010

Where have I been?

I've been making silly puppets,

watching ballerinas,

keeping the cat out of the sandbox (so she doesn't poop in it, again!)
(doesn't she look irritated that Ellie is playing in her toilet)

I had a birthday, I'm not sure how I got so old, hmmmm

...and I hatched some blue bird eggs

Well, I suppose the parents did the actual hatching, but I put up the box, that should count for something.

Where have you been?